Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result
Department of Pediatrics; New England Newborn Screening Program
Aftercare; *Communication; *Cystic Fibrosis; Decision Making; Genetic Counseling; Health Knowledge, Attitudes, Practice; Humans; Infant, Newborn; Massachusetts; Models, Organizational; Models, Psychological; Neonatal Screening; Parental Consent; Parents; *Patient Acceptance of Health Care; Program Evaluation; Retrospective Studies; Time Factors
Allergy and Immunology | Pediatrics | Respiratory Tract Diseases
OBJECTIVE: To evaluate compliance with recommendations for sweat testing/specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result.
STUDY DESIGN: All infants with positive CF NBS results require a diagnostic sweat test at a CF center. Results that were "screen positive and diagnosis negative" prompted family genetic counseling. Parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center.
RESULTS: At each of the 5 MA CF centers, 95% of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32%-90%) with completion of genetic counseling between CF centers.
CONCLUSION: CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic counseling.
DOI of Published Version
J Pediatr. 2005 Sep;147(3 Suppl):S98-100. Link to article on publisher's site
The Journal of pediatrics
Comeau AM, Parad RB, Gerstle R, O'Sullivan BP, Dorkin HL, Dovey M, Haver K, Martin T, Eaton RB. (2005). Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result. Pulmonary and Allergy. https://doi.org/10.1016/j.jpeds.2005.08.007. Retrieved from https://escholarship.umassmed.edu/peds_pulmonary/10